Friday, February 17. 2012

Today, at the end of a long week, my heart is light. Coming back to a country that we visited only two years ago means that we have the chance to do further surgeries on patients we weren't finished with back in 2010. We have two of them on the wards right now, Noelie and Venant. Both needed another operation to remove the tumors that have started to regrow in their faces; Noelie had her surgery yesterday, and Venant is still waiting until we can get his blood pressure a little lower.

This afternoon, I got an e-mail from the screening team letting me know that another patient would be returning on Sunday to attend the plastic surgery screening on Monday. She'd be coming from far up country, so she'd need to stay overnight since she doesn't have any family here in Lomé. When I saw her name, I immediately left word with the team that I wanted to be paged when she arrived.

That page came sooner than I thought it would, and right before dinner I ran back down to D Ward to see Tani. She's a child who was burned at a very young age, losing her top lip, her nose, her right ear and eye and all the fingers on one of her hands. Back in 2010 we started the process of rebuilding her face, using skin from other parts of her body to create a nose and a top lip.

(This is an old photo of her from while she was still healing back in 2010; I can't wait for you to see how good she looks now!)

She was with us on the wards for fifty-six days while her wounds healed, and we came to love her. A lot.

Her eyes lit up when she saw me, and we sat together on the floor while she ate her dinner, leaning up against me like no time had passed. A translator sat with us while I chatted with her caregiver, a friend of her village pastor. (This is what community looks like. The pastor came as her caregiver last time, since he was the only one available who spoke enough French to be able to translate for her obscure tribal language. This time, yet another unrelated man has come all these hours to sleep under Tani's bed and care for her until she is well.) I caught up on the news from the village while Tani twisted around to smile up at me.

She's taller now, much more grown up, but she's still Tani, and it's pure joy to see her again. Her face has healed beautifully, her scars all smoothed out with the passing of time. The plastic surgeon, Dr. Tertius, arrives tonight, and he'll see her on Monday along with all the rest of the hopeful plastics patients. I'll let you know as soon as I know how her story will continue to unfold.

Tuesday, June 29. 2010

It's a strange time on the wards right now. I suppose it always slows down a bit during the summer, but it seems like it's more than usual this year. The wards are emptying out, the combination of only one type of surgery and women healing without any of the usual major complications making it impossible to keep beds full. Not that I'm complaining; it's incredible to see our ladies dancing so soon after surgery, going home to their new lives in their new dresses with their new hope held firmly in their hearts. It's just that, for me, the charge nurse who doesn't really work with the VVF ladies, things aren't so fun.

We kept it up for a while, with Tani and Gafar and Josee providing enough work that we could keep D Ward open and humming. But Tani left yesterday in the darkness just before dawn. Climbed into a bus with thirty other patients and headed north, back to her village where I don't know what will happen to her. She's spent fifty-six days with us, the recipient of almost exclusive attention and constant repetition of our favorite phrases: I love you! I'm beautiful! But now she's home, in a village full of people who might not see her the same way we do. Who might look at her face and still see the maimed little girl who left, the absence of a right eye, the scars snaking across her skin. They might not see her intelligence, her beautiful smile and the sparkle in her left eye. They might make fun of her, just like they used to.

It's so hard to let them go, sometimes.

And it's not just Tani. We sent Gafar to the Hospitality Centre yesterday, too. Away from our constant love and craft ideas, he's withdrawn back into his shell in just twenty-four hours. They called me to see him in the outpatient clinic today where he sat, head low, refusing to meet the nurse's eyes. His ear and eye were swollen, the obvious product of a bandage pushed aside, and when he finally looked up at me I could read the guilt in his good eye, mixed in with what could only be sadness. I think he misses us.

It's so hard to know how best to help them, these kids. Do we keep them in the hospital forever? Shelter them and love them and tell them over and over how precious they are? Or do we let them out, send them home and out of our sight and hope for the best. If Gafar is any indication, I probably don't want to know how Tani's doing.

And the thing is, it's not just them. It's so many of the kids we send home. It's Anicette, who left us and starved to death. It's Maomai, whose story I'll probably never fully know, but who also didn't survive living at home despite everything we did. It's Aissa, whose Uncle Jean missed planting season while he was watching over her in the hospital, and so now they have no food. It's probably a hundred more kids whose stories I haven't heard, and there's nothing I can do about it.

I think it's just a part of this life and this work, the not knowing, but it never really gets easier. It's going to be almost be a relief to see the general surgery patients next week, people who come and go in just a few days. Patients whose names I barely have time to learn. Certainly no time to fall in love and get my heart all tangled up in their stories.

(And knowing me, it'll be about three seconds before I'm wishing myself right back in the middle of all that tangling.)

Friday, June 18. 2010

On closer inspection of the art supplies, it turned out that there were actually two canvasses! And because recent observation of Tani and Gafar has shown an ever-increasing sibling-like rivalry, I figured it wasn't necessarily going to work out for them to work together.

So they each got to work, and the resulting products are wildly different.

Gafar is ten. He had a large tumour removed from the right side of his face. He's been with us for several weeks already while his little body struggles to heal. Up until a few days ago, he was quiet and withdrawn, a bandage covering his right eye and his left eye swollen almost shut. Just recently, he's come out of himself, running around the ward, pestering us to go up to Deck Seven and waiting expectantly for the next craft idea to come out of the charge nurse desk.

Gafar started his painting out very precisely. One by one, he painted the things he knew. A bike, a TV, a car and a boat in every colour. An orange and a soccer ball and a map of Togo, and then he got the idea to start mixing colours. In a few minutes he had painted over all the lovely colours with a dull faintly-purple grey. I think he may have redeemed himself a little by writing the name of each thing very carefully on the back of the canvas in his scraggly little handwriting.

Tani is nine and lives way up in the north of Togo. When she was five, she fell face first into a cooking fire, and lost her right eye and ear. Her face is masked in scars, her nose and top lip burned away and the fingers of her right hand mangled and missing. She's been on the wards for forty-five days now, and we've rebuilt her nose and upper lip. We've taught her to say I love you, and we've taught her to say I'm beautiful! She dances around the ward every day, shrieking about her love and her beauty and it is a deeper truth than any I've known. (Jenn explains it all so much better than I can.)

Tani's painting shows her personality more than anything I can imagine. It's a swirl of colours and shapes, all thrown together with absolute abandon. She attacked the paints like she attacks life; nothing held back, her scarred face pulled into the biggest grin I've ever seen. The result was something like a masterpiece.

I want two of you to have these paintings, painted with love (and, in Gafar's case, a lot of gray) on the Africa Mercy in Togo. Leave me a comment and tell me which one you want. Also, since I absolutely loved hearing about your dangerous streaks last time, I'd love to hear about your creativity this time. Tani's and Gafar's skills are fairly obvious, but what about yours?

I'll go first. I'm a writer. I love to take my experience and somehow distill it enough that it fits into black and white, tiny strokes that contain a life's worth of love. I'm also a photographer. They go together, to me. Capturing moments and setting them down to were I can go back and live them again later. Also, I like Tani's painting best. If I could win, I'd want to win that one.

Thursday, June 17. 2010

I've had weeks here on the ship where I'm so overwhelmed with the work that I lie awake at night, worrying about the kids on the wards. I can't sleep, wondering if they will heal, grow, thrive or even live. They fill my mind, whether I'm on the wards or not.

This week, I've been losing sleep over something entirely different. This week, being an Assistant Ward Supervisor means some kind of cross between a Sunday School teacher, daycare supervisor and camp counselor. With just a tiny bit of nursing thrown in for good measure.

With the VVF ladies taking over B and A Wards at the other end of the hospital, D Ward has become the haven for pediatric eye patients and the three stragglers left over from plastics and maxillo-facial surgery.

Tani, Gafar and Josee, and between the three of them, they are enough to keep us busy.

The busyness isn't in nursing tasks. Josee gets the bandage on her foot changed twice a day, Tani needs some antibiotic cream to the tiny open area on her head at the same times, and Gafar has his bandage re-wrapped every other day. That's it, along with a couple of vitamin and iron pills thrown in for good measure.

Instead, our time is taken up in entertainment. Josee is eighteen and should be able to amuse herself, but she's confined to bed with her foot up on pillows to keep it from swelling. Gafar is ten, and Tani is nine, and they're stuck in a small windowless room for twenty-three hours every single day, and the bottom line is that it's a hospital. There's not much to do.

That's where the Sunday-School-teacher-daycare-supervisor-camp-counselor role comes into play. Instead of IVs and injections and NG feedings, we're focusing on Noah's Ark (complete with cotton balls for the clouds), crayon-coloured creation-story books, and glittery butterfly masks that don't quite fit over faces with eyes either missing or bandaged.

So these days, I lie awake at night and plan out crafts for the next day. It took me far longer to fall asleep last night than it should have, because I couldn't for the life of me think of anything that was going to take up more than half an hour's worth of time.

However, you'll be pleased to know that I've just had an epiphany. Back when Dina sent me that big box of craft supplies back in April, there was something in it I wasn't quite sure how to use on the wards. A little blank canvas and a set of paints and brushes. I took one look at it and pushed to the bottom of the pile, seeing all to clearly in my mind's eye the fights that would break out over such limited resources.

But there are just three of them left. Two, if you count that fact that Josee can't leave her bed and is far more interested in watching the World Cup than the current craft.

Tomorrow, I'm going to head down to the wards and get Tani and Gafar to paint something beautiful for one of you. The two of them have hit it off, and alternate between playing together and fighting like brother and sister, and I think it's only fair that they work together to create a masterpiece. Once it's finished, whatever it is, we're going to have another giveaway on this here blog, and one of you will get to have an authentic piece of African art by two of the continent's premiere up-and-coming artists.

(Please note: I am basing my assessment of their skill solely on how their glittery butterfly masks turned out. This has the potential to either go very, very badly or be totally spectacular. It's going to depend, in large part, how much Gafar is able to control Tani's boundless exuberance for everything craft-related.)

I'll post a photo of the finished product and let you know when it's time to start commenting!

Monday, June 7. 2010

Having my parents here means I'm doing a lot of things I don't normally sign up for. By the time the weekend rolls around, I'm generally exhausted enough that I spend the entire time relaxing in my room, sleeping in and doing very little that could be considered strenuous.

But now my parents are here, and they haven't been living in Africa for the past two years. They haven't grown inured to the sights and sounds and smells of this place; they want to see and hear and smell it all, and being alongside them as they take their first steps on this continent is like starting all over again.

So on Friday, I donned booties and a cap and headed into the OR after work. It was the end of a long week for me, one marked by the constant shuffle of patients from one ward to the next. When Monday had dawned, the list of patients was far longer than the number of beds that were going to be available. Hannah and I put our heads together, scrutinized the nursing schedule, and came up with a crazy scheme to open an empty ward, just for the week, just for the cleft lip babies. It would work, as long as the nurses and patients all stayed relatively healthy. At the bed assignment meeting that morning, we proudly called out the numbers. C1. C3. C7. Twenty minutes later, we had two nurses call out sick and it looked like everything was going to fall apart. I started to count the numbers, mechanically working through the list to see who was actually going to be admitted without C Ward opening, until I realized that each number was a child, a baby who was going to grow up with a face split wide open, battling demons I know nothing about, unless we could come up with a plan.

And so we made it work. It involved a lot of transferring and updating and list-making and admitting on faith, but the the time Friday rolled around, every patient on the list who had arrived had had his or her cleft lip repaired. That afternoon, we were watching the last few, along with three who had showed up on the dock and had their hopes answered. When I arrived, my parents were already there with eyes wide, almost as wide as their grins as they watched lips being sewn back together right in front of them. I watched as Amavi was put to sleep, her lip marked, and the first cuts made that would allow this last girl to present an unbroken face to the world. Together, we watched little boys saved with little tiny stitches from the ridicule that would have followed them to school every day.

On Sunday we crowded into A Ward with a press of patients and crew. I held Tani on my lap, a little one who's had her lip and nose rebuilt after falling into a fire. (The photo of her here is before surgery; I can't wait to show you her afters.) We sang and clapped together, standing to dance in the line of translators and nurses that snaked through the throng with the beat of the drum. Across the ward, my mum sat next to Amavi whose swollen lip showed the telltale signs of surgery. Amavi's papa was a few seats down, clutching his new Bible, her mama next to him with little sister fast asleep on mama's back. Together we raised our voices to God, and when I stretched out my upturned hands, Tani curled her maimed fingers through mine.

She leaned back to rest on my chest and whispered into my ear the phrase she learned along with Aissa. I love you, she told me, while the man in the middle of the room spoke words of healing over us all. After today you will leave this place with a new name. Forget the past. Forget anything they said to you, and go from here with a new name.

All around me sat the congregation of the broken, clutching rags to drooling lips, carrying drains and cradling bandaged limbs. They had limped into the ward for church, some barely making it out of bed. Staples shone silver against brown skin and catheter tubing hung beneath gowns, and as the preacher's words were translated they understood in a way I never will.

You will have a new name. Forget the past. These are people with a past to forget, children who have endured shame like I will never know, women torn apart with no one to put them back together. For maybe the first time they were being told that their future was more than just their pain, that the promise of hope was a sure one.

Together we sat, the broken body of Christ in a tiny hospital ward on a ship off the coast of West Africa. All of us worshiping together with outstretched hands, and I have maybe never understood so clearly why I'm here.

-----

And in case you're a visual person like me, here are a few photos of my parents and I at the orphanage we visited on Saturday. I won't write about these precious kids yet, because I hope to go back and learn their stories off by heart before I share them with you.

Tuesday, May 18. 2010

In the first quiet moment of a new shift this morning, I noticed a small photo sitting on the computer in front of me. Without thinking, I picked up the slip of paper and half-turned to offer it to the girl I was so sure would be standing just behind my chair, waiting for her first job of the day.

Instead, my hand hung in the air for just a moment, unsure, until I remembered that Aissa wasn't on the ward anymore. She wasn't going to be hanging all over me while I tried to do my work, wasn't going to provide me endless moments of amusement by parroting back the words we teach her, wasn't going to be looking up to me, bright-eyed, to exclaim in wonder over her latest artwork creation. She's better now, and so she's not in the hospital anymore.

This morning, that victory felt a little bittersweet. I realize how quickly I grow accustomed to any constant in this place that is defined by change. Aissa has been our constant for over a month, and things felt out of place without her today.

Until I handed a new sheet of stickers to another little girl, who grabbed them from my hand and then grabbed my arm to make sure I was listening while she shouted with her newly reconstructed lip.

I love you!

And so it goes. Aissa leaves us, only to be replaced by Tani. Each one that goes will have another in their bed before nightfall and we will start all over again. Teaching, soothing, playing, laughing, crying, dancing.

welcome!

I'm Ali, wife to Phil and mama to Zoe and Ethan. We spent the past 6 years living and working with Mercy Ships on board the world's largest non-governmental hospital ship, the M/V Africa Mercy, as nurse, electrician, and ship's baby respectively. On board the ship, we worked with a team of volunteers from over thirty different countries, providing free surgical care and healthcare development, bringing hope and healing to the forgotten poor in West and Central Africa.

In March of 2014, during a routine ultrasound, we found out that our son, Ethan, has a four-in-a-million condition known as heterotaxy. He has major congenital heart defects, and had his first open heart surgery before he was a week old. Although the future for our son and our family is uncertain, we are more than ever convinced that God will be faithful to lead and guide us through this new season the same way He has in the past.(I've had a big problem with spam comments around here and literally don't have the time to sort through all of them, so comments on all entries before Ethan's story began have been turned off to keep the numbers down. I moderate all comments on new entries, so don't worry if yours doesn't show up right away. If it won't let you post, please e-mail me at alirae[at]quist[dot]ca. I love hearing from you!)

ali (that's me!)

phil

zoe rae

ethan vikash

ethan's story

Due on the Fourth of July and born on Canada Day, Ethan has given us so much to celebrate. He had his first surgery when he was six days old and amazed the doctors by being ready to go home before he reached the two week mark. Heterotaxy can affect every organ system, but so far Ethan seems to have escaped some of the common complications. While his heart has a number of complex defects, it's working well so far. His intestines actually formed correctly, and his lungs and kidneys are all functioning well. He does have at least five spleens, and it's assumed that they do not function, so his immune system is most likely compromised; he will most likely be taking daily antibiotics for his whole life.

Here are a few links that might be helpful, since the medical side of things can get pretty confusing with a heart this special. The surgeries listed for each of his heart conditions don't necessarily apply in our case, since we have to look at the big picture, not just each individual defect; we're still waiting to see how his heart grows before we decide what the next step, which will probably taking place between 3-6 months, will be.